What does it take to live with a disease that, at best, becomes increasingly debilitating and, at worst, leads to a premature death?
For the past three years, former TV journalist Richard M. Cohen has searched for insight by entering the lives of five people: Denise, 50, who suffers from ALS or Lou Gehrig's disease; Buzz, 50, diagnosed with an aggressive cancer of the lymph nodes; Sarah, 28, whose colon was removed because of Crohn's disease; Ben, 20, who uses a wheelchair because of muscular dystrophy; and Larry, 57, institutionalized for the manic highs and lows of bipolar disorder. Cohen himself has battled multiple sclerosis for three decades, slowly losing his vision, the use of his hands, and his ability to walk without a cane. He tells U.S. News that a hidden power springs forth when the body is weakened—detailed in his new book, Strong at the Broken Places, arriving in bookstores this month. Interview excerpts:
How do people keep going when facing extreme disability or premature death?
There's no way to avoid those initial emotions of anger, fear, denial, and isolation. But these five individuals refuse to buy the casket while they're still feeling OK. They all live for what Larry called "the power of today." And they take pride in helping those even worse off than themselves. Denise, who has trouble swallowing and uses a walker, gets tremendous satisfaction from reaching out to other ALS patients even as she sees them advance to complete immobility, which is her own future. Buzz works at a hospice to help others prepare for death. Larry helped start a national program to train people with mental illnesses to become counselors for those like themselves. They're all trying to gain some degree of control, a way to make a bad thing just a little less bad. "These are the faces of illness," you write. "Do not look away." What do you mean?
Despite the fact that 90 million Americans have some form of chronic illness, we often marginalize sick people. I recently walked into a bar mitzvah, and this usher saw me with my cane and ignored me. When my wife [ Today show cohost Meredith Vieira] walked in, he asked her, "Where would he like to sit?" Ben felt ignored at college parties because everyone was "up there" while he was "down here." Denise's serious boyfriend broke up with her when she was diagnosed. Buzz, who wasn't told at first that he had a potentially fatal cancer, had to say to his doctor, "Look me in the eye, not at my feet." We wish that healthy people would feel the same sense of solidarity with us that the sick feel with each other. I make a point to sit down when I see someone in a wheelchair so we can talk face to face. And Larry, when all of us met in Boston, refused to use a bathroom that wasn't handicap accessible for Ben.
What's the biggest roadblock to leading a normal life?
Getting and keeping a job. Sarah lost her job because she was frequently out sick. Larry, who suffers from bipolar depression, hid his forced hospitalizations on his résumé. Years ago, I hid my MS for a year to land a job at CBS Evening News with Walter Cronkite. The ironic thing is, I worked like a maniac, throwing myself into war zones to prove I could do the job. What challenges do family members face?
Spouses, children, and parents are right there in the sickbed. Sarah's mother devoted most of her life to her daughter's care, to the point that it was very difficult for her to relinquish control when her daughter married. My anger was inflicted on my family, and it took me a while to learn better communication skills to let them know when I'm just frustrated by my physical limitations. Being open with kids is incredibly crucial. I don't hide anything from my teenage kids, and I think they're not fearful because of my honesty. Does chronic illness fundamentally change a person?
Yes, but not always for the worse. Larry told me that if he had a chance to trade in his depression, he wouldn't, and I agree with him. My MS is who I am, part of my identity. It's given me a mission, and I know my three kids are wiser and more sensitive for having grown up with my illness. I'm sitting here with three books that I inscribed urging them to never forget that there are people out there who need their help.